Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 In a message dated 4/12/00 7:11:32 PM Pacific Daylight Time, lisa@... writes: << Good luck. This list is phenomenal. The help is superb, the support is incredible and the understanding of the fears(both realistic and unrealistic), concerns, and information is unbelievable. Ask many questions. We will point you in a direction (often with journal citations form the very medical journals your dr. reads) to do your own research. in CT >> Indeed it is a good list to be on.Excellent post . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 At 10:35 PM 04/12/2000 -0000, you wrote: >Hi, my name is and I have a 10 month old son, . He >was about halfway through his vaccination schedule when I came across >the testimony given in Rep. Dan Burton's hearing about the increase >in >autism cases. Welcome and glad that you were able to wake up about this! I'm >considering bringing a halt to my son's vaccinations but I want to >get >all the information I can to make the decision. I've perused some of >the posts on this list and I know that they are going to be very >helpful to me. I'm very glad you are here! At least postpone any more until you feel well informed! That is what I would do. As I said to , lots of us have thousands of articles and everyone here has much to share from experience and research. The information about the terribleness of most of those diseases is GREATLY exaggerated. Sheri -------------------------------------------------------- Sheri Nakken, R.N., MA wwithin@... Well Within's Earth Mysteries & Sacred Site Tours http://www.nccn.net/~wwithin Bookstore - http://www.nccn.net/~wwithin/bookstor.htm International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers Education, Homeopathic Education KVMR Broadcaster/Programmer/Investigative Reporter, Nevada City CA CEU's for nurses, Books & Multi-Pure Water Filters Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Welcome! I understand what you are saying about pro and " anti " vaccine. I say that in quotes because I think most people are actually pro-choice which means letting people have the information and making a choice. My daughter had a serious reaction to the Hep B vaccine at one day old. I learned from my mom about a study in UK in which 50% of pediatricians don't vaccinate themselves or their children for Hep B. This got me thinking: What did the pediatricians, who come in contact with bacteria and viruses DAILY, know that I don't? Some suggestions for research you may want to consider: 1. Investigate how many actual cases of a disease occurred. If I am remembering right the WHO (not the most reliable or independent group...the french man who allowed the aids tainting of the blood...someone correct me if I got the wrong disease...is now heading a part of the WHO) website has each disease and disease incidence rates. I think 1996 was the last year. 2. Investigate how the disease is spread and how it would be treated should one contract it. In most cases good hygiene and nutrition do wonders! An excellent reference book is called " Smart Medicine for a Healthier Child " by Zand, et al. It is broken up into different diseases and under each disease there is the conventional method of treatment, acupressure, herbs, vitamins, prevention, homeopathic, etc. remedies. EXCELLENT book!!! 3. Investigate how processed food and sugar, aspartame, etc. lower the bodies immune system. 4. Investigate alternatives such as homeopathy for prevention or treatment of a disease. Herbs, chiropractic care, etc. I know of a family, personally, were everyone got pertussis. From the baby to the parents. The parents and the older child had been FULLY vaccinated. The mother treated the whole family with alt. remedies (ie. homeopathy, herbs, etc.) and they ALL came through unscathed. 5. Make sure to follow the $$$ with the vaccines. An excellent starting article is Dec. 1996 Money magazine (about as neutral as you can get) that follows DPT and Polio vaccines. The title of the article is " The Lethal Danges of the Billion Dollar Vaccine Business " . Investigate who sits on the Advisory Committee on Immunization Practices (ACIP) which makes the recommendations to the CDC for what should be recommended for mandating. As an example, Dr. Offit sits on the ACIP. According to recent congressional testimony (April 6, 2000) he acknowledged that he has been receiving funds for developing the rotavirus vaccine since 1992. The same vaccine that was approved about 2 years ago and pulled off the market last summer! 6. Investigate the theories on how diseases in general spread. There is the germ theory, which is what the CDC, AMA, etc espouse as being the WHOLE truth. This theory basically says all disease is spread through the germs. I, personally, buy part of that argument. But what about all those people that were in close contact, some even sleeping in the same bed, as people who were completely paralyzed with polio but they never got polio? There are many people who believe that if the body's immune system is down (ie. not in optimum health..eating sugar which robs the body of nutrients) then when they come in contact with a germ they get sick versus being able to fight off the disease. 7. Get the vaccine package inserts. READ them. They are VERY different from what the regular doctors are going to tell you. It will list all the side effects. 8. Make sure to investigate what is in the vaccines for preservatives, carrying agents, etc. Formaldehyde, Mercury (Aka Thimerosal), etc. are in the vaccines which are injected into the blood 9. NEXT, make YOUR OWN DECISION. The medical establishment has been wrong or changed their mind before with x-raying pregnant women, DES drug, circumsion, breastfeeding, overusing antibiotics, etc. 10. Finally, understand and this is really important...there are no guarantees! You could get the vaccine and your child could come down with the exact disease your child got vaccinated for...this is more common than you think. Or, you could not vaccinate and your child could get the disease. The question comes down to how much responsibility you are willing to take for your childs health (ie. good nutrition, doing research) versus doing the easy thing which is to go along with what the doctor says with no questions asked. Good luck. This list is phenomenal. The help is superb, the support is incredible and the understanding of the fears(both realistic and unrealistic), concerns, and information is unbelievable. Ask many questions. We will point you in a direction (often with journal citations form the very medical journals your dr. reads) to do your own research. in CT " (son is positional) " wrote: > > Hi, my name is and I have a 10 month old son, . He > was about halfway through his vaccination schedule when I came across > the testimony given in Rep. Dan Burton's hearing about the increase > in > autism cases. I read the testimony and was shocked. I can't believe > that there is all the anecdotal evidence that MMR vaccine causes such > severe reactions and yet the medical community categorizes it as > 'coincidental'. And I can't believe that doctors at the hearing > could > give him the same line of baloney after he told them the > heartbreaking > story of his grandson. I think the most troubling fact of all is > that > we parents are required to vaccinate our children or face all kinds > of > ramifications. I feel that if there was ever a choice that should be > up to the parents, it's this one. We are the ones who have to deal > with the consequences, one way or another, aren't we? I've tried to > educate myself via the web and just bought " The Vaccine Guide " by Dr. > Neustaedter, but I'm finding that people are either so pro or anti > vaccine that it is hard to know propaganda from facts. I'm > considering bringing a halt to my son's vaccinations but I want to > get > all the information I can to make the decision. I've perused some of > the posts on this list and I know that they are going to be very > helpful to me. I'm very glad you are here! > > > > ------------------------------------------------------------------------ > Whatever you want, chances are you'll find it at one of the hundreds > of sites in The PointClick Network--like Disney.com, eCost.com, > FogDog.com and many more. You get paid as you shop and an additional > 10% off any purchase, anytime. > 1/2994/5/_/489317/_/955579084/ > ------------------------------------------------------------------------ -- @... *************************************************************** *************************************************************** Any information obtained here is not to be construed as medical OR legal advice. The decision to vaccinate and how you implement that decision is yours and yours alone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Welcome! Do you know the laws for your state? It is important to be educated on the laws for your state. Stick around and you will learn lots! You can always stop vaccinating until you reach a decision. The MMR vaccine and the chicken pox will be the next vaccines for your son, research those first. had some great suggestions too. Let us know if you have any questions. List Owner New member... Hi, my name is and I have a 10 month old son, . He was about halfway through his vaccination schedule when I came across the testimony given in Rep. Dan Burton's hearing about the increase in autism cases. I read the testimony and was shocked. I can't believe that there is all the anecdotal evidence that MMR vaccine causes such severe reactions and yet the medical community categorizes it as 'coincidental'. And I can't believe that doctors at the hearing could give him the same line of baloney after he told them the heartbreaking story of his grandson. I think the most troubling fact of all is that we parents are required to vaccinate our children or face all kinds of ramifications. I feel that if there was ever a choice that should be up to the parents, it's this one. We are the ones who have to deal with the consequences, one way or another, aren't we? I've tried to educate myself via the web and just bought " The Vaccine Guide " by Dr. Neustaedter, but I'm finding that people are either so pro or anti vaccine that it is hard to know propaganda from facts. I'm considering bringing a halt to my son's vaccinations but I want to get all the information I can to make the decision. I've perused some of the posts on this list and I know that they are going to be very helpful to me. I'm very glad you are here! ------------------------------------------------------------------------ Whatever you want, chances are you'll find it at one of the hundreds of sites in The PointClick Network--like Disney.com, eCost.com, FogDog.com and many more. You get paid as you shop and an additional 10% off any purchase, anytime. 1/2994/5/_/489317/_/955579084/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Excellent, . Sheri At 10:11 PM 04/12/2000 -0400, you wrote: >Welcome! I understand what you are saying about pro and " anti " vaccine. >I say that in quotes because I think most people are actually pro-choice >which means letting people have the information and making a choice. > >My daughter had a serious reaction to the Hep B vaccine at one day old. >I learned from my mom about a study in UK in which 50% of pediatricians >don't vaccinate themselves or their children for Hep B. This got me >thinking: What did the pediatricians, who come in contact with bacteria >and viruses DAILY, know that I don't? > -------------------------------------------------------- Sheri Nakken, R.N., MA wwithin@... Well Within's Earth Mysteries & Sacred Site Tours http://www.nccn.net/~wwithin Bookstore - http://www.nccn.net/~wwithin/bookstor.htm International Tours, Homestudy Courses, ANTHRAX & OTHER Vaccine Dangers Education, Homeopathic Education KVMR Broadcaster/Programmer/Investigative Reporter, Nevada City CA CEU's for nurses, Books & Multi-Pure Water Filters Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 New member... > Hi, my name is and I have a 10 month old son, . He > was about halfway through his vaccination schedule when I came across > the testimony given in Rep. Dan Burton's hearing about the increase > in > autism cases. I read the testimony and was shocked. I can't believe > that there is all the anecdotal evidence that MMR vaccine causes such > severe reactions and yet the medical community categorizes it as > 'coincidental'. And I can't believe that doctors at the hearing > could > give him the same line of baloney after he told them the > heartbreaking > story of his grandson. I think the most troubling fact of all is > that > we parents are required to vaccinate our children or face all kinds > of > ramifications. I feel that if there was ever a choice that should be > up to the parents, it's this one. We are the ones who have to deal > with the consequences, one way or another, aren't we? I've tried to > educate myself via the web and just bought " The Vaccine Guide " by Dr. > Neustaedter, but I'm finding that people are either so pro or anti > vaccine that it is hard to know propaganda from facts. I'm > considering bringing a halt to my son's vaccinations but I want to > get > all the information I can to make the decision. I've perused some of > the posts on this list and I know that they are going to be very > helpful to me. I'm very glad you are here! > > > You can have a look at my site http://www.whaleto.freeserve.co.uk/vaccines.html There is a billion dollar industry pushing the pro-vaccine side plus the folk who worship the medical industry and their white coats (god worship being out of fashion at the moment). They will lie and do anything to protect this industry (some heretics meet untimely deaths like Mendelsohn and Willner), and the fact that 98% of it is built on sand in that 98% of the drugs are useless and toxic, and naturopathy, herbs, nutrition & homeopathy are over100 times more effective--which is why they keep them in their place. Autism was first found in 1944 or thereabouts, just about the time mass vaccine campaigns came about. Looks to be a man made disease to me along with polio. The only advantage with the medical doctors over the masons is at least you know who is a doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 In a message dated 4/12/00 3:38:12 PM Pacific Daylight Time, xavierandrew@... writes: << Hi, my name is and I have a 10 month old son, . >> Hi, - I, too, have a 10 month old son, . He received 2 shots at his 2-month check-up, and nothing since then. We were undecided when we received his shots (and a little afraid to tell the ped), but after seeing his reaction (fever, irritability, sleepiness), we decided that we were more comfortable with him getting the diseases and gaining his own immunity. Because the ones that he can basically contract in this day and age are rather 'mild' childhood illness and more dangerous later in life, we feel very comfortable with our decision. He has only had 2 minor colds and 1 bout of croup. I hope you find the information you need to help you decide on this list! Teri and (6/4/99) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 Dear Teri, Thanks for your post! I think your decision makes a lot of sense, and glad to know there is someone else in the group who has a 10 month old. I'm curious, when you told your pediatrician that you had decided to discontinue 's immunizations, how did he/she react? We are preparing to tell our ped that we are considering at the very least postponing any more shots, and though no amount of bullying will change our minds, I'm wondering how much wrath to expect. Good for you for doing what you think is right. Sincerely, ---------- >From: nojabs4us@... >Vaccinationsegroups >Subject: Re: New member... >Date: Sat, Apr 15, 2000, 11:58 AM > >In a message dated 4/12/00 3:38:12 PM Pacific Daylight Time, >xavierandrew@... writes: > ><< Hi, my name is and I have a 10 month old son, . >> > >Hi, - > >I, too, have a 10 month old son, . He received 2 shots at his 2-month >check-up, and nothing since then. We were undecided when we received his >shots (and a little afraid to tell the ped), but after seeing his reaction >(fever, irritability, sleepiness), we decided that we were more comfortable >with him getting the diseases and gaining his own immunity. Because the ones >that he can basically contract in this day and age are rather 'mild' >childhood illness and more dangerous later in life, we feel very comfortable >with our decision. He has only had 2 minor colds and 1 bout of croup. > >I hope you find the information you need to help you decide on this list! > >Teri and (6/4/99) > >------------------------------------------------------------------------ >Get paid for the stuff you know! >Get answers for the stuff you donÃt. And get $10 to spend on the site! >1/2200/5/_/489317/_/955825094/ >------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome Jen. Glad to have you! Well, you say if you had your dx earlier....... my dd was nearly 13 by the time we got hers of AS, ADHD, ODD and mood disorder nos (possibly bi polar) although she had plenty of incorrect diagnoses from the time she was born until then! My son is almost 7 (in Dec also!) and just got a dx of PDD nos. So you have an excellent opportunity with the early diagnosis to know which direction to take Skye, rather than floundering around trying to find something that works for something that you have yet to identify as a problem correctly. We are glad to have you here. This group has been a lifesaver for me. Not only due to the excellent advice and info on resources I have received but most especially with my own sanity! Knowing I am not alone, others are going through this or something similar and understand where I am coming from..... well that is priceless. Hope to hear more from you soon! Good luck and God bless! DeeDee mom of Aslynne almost 16 nt, Elissa almost 14 dx above and Tynan almost 7 dx above. Jen & Buddy <budandjen@...> wrote: Hi Everyone! Thank so much for letting me join your group. My name is Jen (Jenwood is a nickname I go by) and I live in Texas with my husband, Buddy, who is an OTR trucker. I am a SAHM to our two children...Tanner and Skye. Tanner is six years old and in first grade. Skye is 2.5 and will turn three in December. Skye is my special kiddo. Since she was a baby, things just haven't seemed right. I didn't gain any weight throughout my pregnancy and I ended up having a horrid surgery when I was 7.5 months pregnant with her. She has been slow at achieving all of her milestones and she walks with one heel in the air. Last May, we were referred to a neurologist. He definitely pegged her as developmentally delayed and a series of scans and blood work were ordered. That all came back normal as in nothing physically wrong with her. Two neurologists have seen her now and the final diagnosis as of today is Autism. Right now she is classified as severe and we are in the process of getting her enrolled in The Child Study center here and hopefully they can get me an appointment quickly. If we had known that something was wrong earlier, she could have been working with ECI all this time. Now, with how long it takes them to get her processed and into the system, I am reluctant to set up the appointment because they will just drop her when she turns three and the public school system will pick her up. It appears that we have a journey ahead of us and I am glad that I found this group. It is definitely easier to talk to others who are going through the same or similar situations. Every child is different and I am thankful that I have been blessed with two awesome kiddos! Thanks again for letting me join. I look forward to gaining much needed insight and support as well as offering my own. "If You Bought It...A Trucker Brought It" Want to Visit Me? Jen's Insanity Lil Truck Siggie © Jen Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Welcome Jen. Glad to have you! Well, you say if you had your dx earlier....... my dd was nearly 13 by the time we got hers of AS, ADHD, ODD and mood disorder nos (possibly bi polar) although she had plenty of incorrect diagnoses from the time she was born until then! My son is almost 7 (in Dec also!) and just got a dx of PDD nos. So you have an excellent opportunity with the early diagnosis to know which direction to take Skye, rather than floundering around trying to find something that works for something that you have yet to identify as a problem correctly. We are glad to have you here. This group has been a lifesaver for me. Not only due to the excellent advice and info on resources I have received but most especially with my own sanity! Knowing I am not alone, others are going through this or something similar and understand where I am coming from..... well that is priceless. Hope to hear more from you soon! Good luck and God bless! DeeDee mom of Aslynne almost 16 nt, Elissa almost 14 dx above and Tynan almost 7 dx above. Jen & Buddy <budandjen@...> wrote: Hi Everyone! Thank so much for letting me join your group. My name is Jen (Jenwood is a nickname I go by) and I live in Texas with my husband, Buddy, who is an OTR trucker. I am a SAHM to our two children...Tanner and Skye. Tanner is six years old and in first grade. Skye is 2.5 and will turn three in December. Skye is my special kiddo. Since she was a baby, things just haven't seemed right. I didn't gain any weight throughout my pregnancy and I ended up having a horrid surgery when I was 7.5 months pregnant with her. She has been slow at achieving all of her milestones and she walks with one heel in the air. Last May, we were referred to a neurologist. He definitely pegged her as developmentally delayed and a series of scans and blood work were ordered. That all came back normal as in nothing physically wrong with her. Two neurologists have seen her now and the final diagnosis as of today is Autism. Right now she is classified as severe and we are in the process of getting her enrolled in The Child Study center here and hopefully they can get me an appointment quickly. If we had known that something was wrong earlier, she could have been working with ECI all this time. Now, with how long it takes them to get her processed and into the system, I am reluctant to set up the appointment because they will just drop her when she turns three and the public school system will pick her up. It appears that we have a journey ahead of us and I am glad that I found this group. It is definitely easier to talk to others who are going through the same or similar situations. Every child is different and I am thankful that I have been blessed with two awesome kiddos! Thanks again for letting me join. I look forward to gaining much needed insight and support as well as offering my own. "If You Bought It...A Trucker Brought It" Want to Visit Me? Jen's Insanity Lil Truck Siggie © Jen Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Dear Jen, What a neat website. I wish I knew how to do stuff like that! Welcome to you. with Love, Francine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 , Welcome to the group, but I'm sorry your son has Achalasia. Perhaps his could be considered secondary achalasia? That would mean that it's secondary to another condition, unlike most here who have primary achalasia. Where are you located and who is your son seeing for help? His may be a more complicated case, but with any case of Achalasia (which is rare), it's a good idea to seek the advice of a doctor who has lots of experience with it. Usually, those doctors are located at university hospitals or larger (tertiary, as my husband's doctor calls them) medical centers such as Cleveland Clinic or Mayo Clinic, etc. Good luck to you in your search for answers! in Michigan > > Hello everyone, > > I apologize in advance for the length of this. > > My name is , and my 10 year-old son was recently diagnosed with > achalasia. Our hospital is chomping at the bit to do > surgery, but that's on hold for now. > > My son has several neurological conditions that may contribute to the > achalasia. One of the links here mentions the possibility of an > autoimmune disease or virus as a cause. Interesting! I have always > felt he may have an autoimmune disease (I have two) since he > contracted a rare seizure disorder three years ago. He also had a > virus last fall, which seemed to spark the symptoms again. > > Because he has central sleep apnea, my theory is that if the nerve > signals to the heart and lungs can be interfered with, why not the > esophagus and stomach, too? This is why nobody is certain that the > surgery will be help him. Oddly, his apnea episodes have been > relatively " quiet " since the recent onset of achalasia. > > His symptoms, poor appetite and weight loss, have occurred at least > three times in the past. Each time has resolved on its own. > Unfortunately, it seems his muscles are beginning to be affected. I'm > told by the doctors that achalasia doesn't " wax and wane, " > but he is never a textbook case. > > For now, they will place a mediport and begin TPN (total parenteral > nutrition) intravenous feedings and then reassess. The surgeon was > against a J-tube since he feels would complicate a surgery later. We > are discussing the possibility of relaxing the sphincter with meds. > > I'm very worried about a permanent, irreversible operation that may, > or may not, work on him. I'm concerned about the sphincter to the > stomach being permanently open and the fact that he will be on proton > pump inhibitors for a lifetime. > > I am researching the relationship between neurological issues and > achalasia. So far, all of the literature seems to involve otherwise > healthy adults. I'm also interested in alternative treatments (other > than dilation or botox) and medications. In the end, surgery may be > necessary, but we're open to trying other things first. > > I'm looking forward to learning here. Any thoughts or input are > appreciated. Thanks for having me. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 HI Welcome to the group! Let us know where you are located and we can help point you into the direction of Drs who are specialized in Achalasia.That is crucial. I also have a son with achalasia and he was 12 when first diagnosed.Never had any history of being sick until all of a sudden the symptoms started and progressed quickly in just a few months out of no where. HE has since had the operation and is doing great.If you have any specific questions just ask away.I dont have any info or anything on other options other than surgery I will tell you, so I may not be of help.I am here though to help any way I can and answer what questions I can. Its very hard I know what you and your son are going through.You have found a great start to information on Achalasia here Tonia in Va > > > > Hello everyone, > > > > I apologize in advance for the length of this. > > > > My name is , and my 10 year-old son was recently diagnosed with > > achalasia. Our hospital is chomping at the bit to do > > surgery, but that's on hold for now. > > > > My son has several neurological conditions that may contribute to the > > achalasia. One of the links here mentions the possibility of an > > autoimmune disease or virus as a cause. Interesting! I have always > > felt he may have an autoimmune disease (I have two) since he > > contracted a rare seizure disorder three years ago. He also had a > > virus last fall, which seemed to spark the symptoms again. > > > > Because he has central sleep apnea, my theory is that if the nerve > > signals to the heart and lungs can be interfered with, why not the > > esophagus and stomach, too? This is why nobody is certain that the > > surgery will be help him. Oddly, his apnea episodes have been > > relatively " quiet " since the recent onset of achalasia. > > > > His symptoms, poor appetite and weight loss, have occurred at least > > three times in the past. Each time has resolved on its own. > > Unfortunately, it seems his muscles are beginning to be affected. I'm > > told by the doctors that achalasia doesn't " wax and wane, " > > but he is never a textbook case. > > > > For now, they will place a mediport and begin TPN (total parenteral > > nutrition) intravenous feedings and then reassess. The surgeon was > > against a J-tube since he feels would complicate a surgery later. We > > are discussing the possibility of relaxing the sphincter with meds. > > > > I'm very worried about a permanent, irreversible operation that may, > > or may not, work on him. I'm concerned about the sphincter to the > > stomach being permanently open and the fact that he will be on proton > > pump inhibitors for a lifetime. > > > > I am researching the relationship between neurological issues and > > achalasia. So far, all of the literature seems to involve otherwise > > healthy adults. I'm also interested in alternative treatments (other > > than dilation or botox) and medications. In the end, surgery may be > > necessary, but we're open to trying other things first. > > > > I'm looking forward to learning here. Any thoughts or input are > > appreciated. Thanks for having me. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Welcome to the group, so sorry your son is having difficulty. You mentioned the doctors said achalasia doesn't wax and wane... that isn't necessarily true for everyone, there is a steady progression, but it isn't a straight line, we might be able to eat things you wouldn't think we can eat, like crispy thin crust pizza, but not be able to eat applesauce. Usually higher fat food works better, anything like fruit and vegetables are often more difficult. Crisp croutons for a salad might work, but not soft bread. That may give the appearance of waxing and waning. Also sometimes the les does open, usually off and on in hours, not days, but we may have better weeks than others. If he has spasms, those can disappear for weeks, but then happen every hour for a few days. Sometimes we convince ourselves we can live with it, especially if we are overweight as many of us are. If he is coughing at night, it helps to keep his head elevated at night, you might put those bed lifters (I saw some at Bed Bath and Beyond) just at the head of the bed. One of our members here, Sandi in No California has gone through the surgery and in addition has a grandson with some problems, but not achalasia. She and her daughter have learned an incredible amount about neurological problems and she has special insight into achalasia. If you like I'll dig up her phone number. Sandy> >> > Hello everyone,> > > > I apologize in advance for the length of this. > > > > My name is , and my 10 year-old son was recently diagnosed with> > achalasia. Our hospital is chomping at the bit to do> > surgery, but that's on hold for now. > > > > My son has several neurological conditions that may contribute to the> > achalasia. One of the links here mentions the possibility of an> > autoimmune disease or virus as a cause. Interesting! I have always> > felt he may have an autoimmune disease (I have two) since he> > contracted a rare seizure disorder three years ago. He also had a> > virus last fall, which seemed to spark the symptoms again. > > > > Because he has central sleep apnea, my theory is that if the nerve> > signals to the heart and lungs can be interfered with, why not the> > esophagus and stomach, too? This is why nobody is certain that the> > surgery will be help him. Oddly, his apnea episodes have been> > relatively "quiet" since the recent onset of achalasia.> > > > His symptoms, poor appetite and weight loss, have occurred at least> > three times in the past. Each time has resolved on its own.> > Unfortunately, it seems his muscles are beginning to be affected. I'm> > told by the doctors that achalasia doesn't "wax and wane,"> > but he is never a textbook case.> > > > For now, they will place a mediport and begin TPN (total parenteral> > nutrition) intravenous feedings and then reassess. The surgeon was> > against a J-tube since he feels would complicate a surgery later. We> > are discussing the possibility of relaxing the sphincter with meds. > > > > I'm very worried about a permanent, irreversible operation that may,> > or may not, work on him. I'm concerned about the sphincter to the> > stomach being permanently open and the fact that he will be on proton> > pump inhibitors for a lifetime.> > > > I am researching the relationship between neurological issues and> > achalasia. So far, all of the literature seems to involve otherwise> > healthy adults. I'm also interested in alternative treatments (other> > than dilation or botox) and medications. In the end, surgery may be> > necessary, but we're open to trying other things first.> > > > I'm looking forward to learning here. Any thoughts or input are> > appreciated. Thanks for having me.> > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Dear , Welcome to the group and so sorry to hear of your sons diagnosis of achalasia along with all of his other ailments. As Sandy posted to you, I have a grandson with many problems….neurological and metabolic. He was diagnosed with mitochondrial disease last summer and is doing much better now that the diagnosis was made and he is on the right treatment plan….He is almost 3 years old and can finally stand up by himself and can even take steps if holding on to something or someone. His future is looking very good, but the seizures are problematic and put him in the hospital frequently. He is not allowed to fast as fasting would cause an energy crisis where his organs could start shutting down. We learned this last summer when we almost lost him to liver failure but we also learned his diagnosis which has put us on the right path. While does not suffer from achalasia himself, achalasia is a secondary symptom of mitochondrial disease. (He was tested for swallowing problems last summer and thankfully he does not suffer from achalasia). I don’t like to cause undue worries in anyone’s minds and it is not my place to try to diagnose your son’s symptoms, but when I read your message, I couldn’t help to be suspicious of mitochondrial disease. Seizures, low tone, muscle weakness and achalasia are all symptoms and there are many, many different types and varying degrees of severity. ’s is moderate and with diet and supplemental treatment, he is thriving and we are able to keep it under control. I certainly hope that it is not a possibility, but it wouldn’t hurt to investigate. It is not something that most doctors would consider as a possibility due to its rarity….it is also genetic. The mitochondria have its very own DNA (mtDNA) which is separate from our nuclear DNA. It could be inherited from both parents but if it is a genetic problem with mtDNA, it is inherited from the mother. Here are some links which explain in detail. http://www.umdf.org/site/c.dnJEKLNqFoG/b.3041929/ http://biochemgen.ucsd.edu/mmdc/brochure.htm Sandi in No CA From: achalasia [mailto:achalasia ] On Behalf Of Sent: Saturday, March 15, 2008 8:04 AM achalasia Subject: New Member... Hello everyone, I apologize in advance for the length of this. My name is , and my 10 year-old son was recently diagnosed with achalasia. Our hospital is chomping at the bit to do surgery, but that's on hold for now. My son has several neurological conditions that may contribute to the achalasia. One of the links here mentions the possibility of an autoimmune disease or virus as a cause. Interesting! I have always felt he may have an autoimmune disease (I have two) since he contracted a rare seizure disorder three years ago. He also had a virus last fall, which seemed to spark the symptoms again. Because he has central sleep apnea, my theory is that if the nerve signals to the heart and lungs can be interfered with, why not the esophagus and stomach, too? This is why nobody is certain that the surgery will be help him. Oddly, his apnea episodes have been relatively " quiet " since the recent onset of achalasia. His symptoms, poor appetite and weight loss, have occurred at least three times in the past. Each time has resolved on its own. Unfortunately, it seems his muscles are beginning to be affected. I'm told by the doctors that achalasia doesn't " wax and wane, " but he is never a textbook case. For now, they will place a mediport and begin TPN (total parenteral nutrition) intravenous feedings and then reassess. The surgeon was against a J-tube since he feels would complicate a surgery later. We are discussing the possibility of relaxing the sphincter with meds. I'm very worried about a permanent, irreversible operation that may, or may not, work on him. I'm concerned about the sphincter to the stomach being permanently open and the fact that he will be on proton pump inhibitors for a lifetime. I am researching the relationship between neurological issues and achalasia. So far, all of the literature seems to involve otherwise healthy adults. I'm also interested in alternative treatments (other than dilation or botox) and medications. In the end, surgery may be necessary, but we're open to trying other things first. I'm looking forward to learning here. Any thoughts or input are appreciated. Thanks for having me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 wrote: > I apologize in advance for the length of this. > Hello, . Likewise I am sorry about hitting you with so much information right away. > ... Our hospital is chomping at the bit to do > surgery, but that's on hold for now. ... > Don't let them touch him unless they have someone that has done many Heller myotomies. Surgeons compare their first fifty myotomy with their second fifty when talking about the learning curve for doing them. They should have done many and do them frequently. It seems like it would be easy, so surgeons that have not done them think they have the skill from doing other esophageal surgeries, but it turns out it can be tricky to get right. The myotomy has to be long enough and deep enough so that the muscles of the Lower Esophageal Sphincter (LES) are weakened enough to let food easily pass through. It also has to leave the muscles strong enough to keep reflux down, or a partial fundoplication needs to done which also needs to be tight enough but also loose enough. In your son's case the surgeon should also be experienced with doing all this on children. Achalasia is rare in adults but at least 10 times more rare in children. In a population of 100,000 people there should be about one new case of achalasia each year. Not every case is going to have a myotomy. A medical center has to serve a large population in order for there to be enough cases to be doing frequent myotomies. The population would have to be very large to have any significant amount of childhood cases. > My son has several neurological conditions that may contribute to the > achalasia. You have not said how your son was diagnosed. Did they do a manometry? If there is the possibility of some other neurological condition effecting the muscles of the esophagus a manometry can be very helpful in finding out just how the muscles are functioning. It could even indicate that what is thought to be achalasia is not. > One of the links here mentions the possibility of an > autoimmune disease or virus as a cause. There is evidence for both a virus and an autoimmune cause, but there is also reasons to doubt either as the cause. > Because he has central sleep apnea, I feel for him on that. I had a sleeping disorder through high school and college. It messed with my life more than achalasia ever did. > my theory is that if the nerve > signals to the heart and lungs can be interfered with, why not the > esophagus and stomach, too? > The vagus nerve connect most of the organs of the body to the brain, even the heart, lungs and esophagus. > This is why nobody is certain that the > surgery will be help him. That needs a better explanation and you should probably ask for one. If they have done the manometry they should know what the pressures in the LES are and how dysfunctional his peristalsis is. The myotomy does one thing. It reduces pressure at the LES. The myotomy will be more likely to help if the pressures in the LES are high or if the peristalsis in the lower esophagus is weak or nonexistent. The myotomy will be less likely to help if the pressures are not high, or there are spasms acting as strictures in the esophagus above the LES. DES (Diffuse Esophageal Spasm) is somewhat similar to achalasia but it is more of a problem with spasms and not a problem of the LES or week peristalsis. DES often is not helped by myotomy. When there is doubt that a myotomy will work sometimes dilatation or Botox are used to see if treating the LES reduces symptoms. Dilatation tends to not work very well in children. Botox has recently been put under a warning for use in children as there is a small risk of death for them from it. I would ask about these anyway, if they have someone with experience in this context and the question of benefit from myotomy is explained. > Oddly, his apnea episodes have been > relatively " quiet " since the recent onset of achalasia. > One can only guess what that could mean. > His symptoms, poor appetite and weight loss, have occurred at least > three times in the past. Each time has resolved on its own. > I never had a poor appetite. There were times that eating was hard to do but I was hungry. > Unfortunately, it seems his muscles are beginning to be affected. Which muscles are these? Just esophageal muscles? > I'm > told by the doctors that achalasia doesn't " wax and wane, " > but he is never a textbook case. > Mine did that a lot, over many years. There were times it seemed to be gone. > ... The surgeon was > against a J-tube since he feels would complicate a surgery later. ... I don't see why that would be a big deal to the surgeon. It seems like they handle that kind of thing often. I could be wrong though. > We > are discussing the possibility of relaxing the sphincter with meds. That is usually not very effective, but it can work. It often cause headaches. But could be worth a try to just to find out how he responds to the lower pressure. If it helps it could indicate that the myotomy would help. > I'm very worried about a permanent, irreversible operation that may, > or may not, work on him. Myotomy is about 90% successful and up to 95% successful in some of the better centers and less likely if your surgeon is new at it. The sources for these statistics are not specific to children though and may only be correct for adults. I sure don't want mine reversed. > I'm concerned about the sphincter to the > stomach being permanently open and the fact that he will be on proton > pump inhibitors for a lifetime. > Good to be concerned but those concerns need to be weighed against the risks of the alternatives. In my case I decided that the risks from surgery did not compare to the benefit of living a more normal life that myotomy could provide me. There are no guarantees though. > I am researching the relationship between neurological issues and > achalasia. Let us know if you find anything or want some feedback on what you find. > So far, all of the literature seems to involve otherwise > healthy adults. Achalasia in children if very rare, so studying them is a problem. > I'm also interested in alternative treatments (other > than dilation or botox) and medications. There is a lot of that here to, but it is not my thing. > In the end, surgery may be > necessary, but we're open to trying other things first. > That is understandable, but while you try things be aware that his childhood is passing by. A myotomy often provides children a dramatic difference and a normal childhood they would otherwise have missed. Parents of other achalasia children can tell you their stories of how things changed after successful surgery. And there is also a story or two about using the wrong surgeon first. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Wow, thank you for the warm welcome and information. I appreciate them. To answer some of the questions: My son is seen by physicians at the UPMC Children's Hospital in Pittsburgh. I feel fairly confident in the docs since the gastro is the department head, and the surgeon is the clinical director for ped surgery. In addition, one of his docs is the director for clinical excellence and service, but this doesn't mean they know everything, and we know they don't. mentioned secondary achalasia. This is very interesting to me since as I wrote, I have my own suspicions. I'm going to ask about this! asked about the name of my son's seizures. Depending upon the doc referencing them, you can either see them as ESES (Electrical Status Epilepticus during Slow wave sleep) or CSWS (Continuous Spike-Wave Discharges during Sleep). He was diagnosed three years ago February. Unfortunately, this hospital has never treated this disorder, so I have been fighting to be referred out. Finally, the one doc was ready to talk to those outside of here who have successfully treated ESES/CSWS, but now that's on hold since the treatment is very high doses of prednisone. If I do decide to go ahead with the surgery, then he can't be on this protocol. However, I do wonder if the prednisone might help the achalasia. Hmmm... Sandy, thanks for the tip. The head of his bed is actually raised anyway because of his VP shunt. Thankfully, he does not cough in the night, so this is a good sign! My son has always been thin, so he started out with not having much to spare. It's interesting how the different textured foods affect this. He hasn't complained about eating anything. The only thing he says is, after a few bites, that he can't eat anymore because he's " full. " What I was told about his condition is that there are few contractions of the esophagus, and when it does contract, they are weak. He was diagnosed from an upper GI and endoscopy. He has not had the manometry since they are not sure it's an option for him. Sandi - Believe it or not, one of his docs actually emailed me that he is suspicious of my son developing mitochondrial disease! I would love to hear more about your grandson's condition and how achalasia is a secondary condition. (Feel free to email me privately.) I have been begging for these people to test him for autoimmune disorders, and I do want this testing done as well. Wow. Notan - Thank you for the information. I do plan to ask about the number of Heller's done, but I can't imagine that number is very high considering the rarity of this. The only thing that comforts me is that the surgeon knew exactly what needed done (as did the gastro), and that he is the co-director for UPMC's adult hospital. Unfortunately, my son never complains about being hungry. I think his stomach has become so small that a tiny bit of food satisfies it. I agree with you that I don't understand why the g or j tubes would be a big deal to them, but it seems they are. You asked about the muscle comment I made. It seems that the muscles are weakening because now he has developed a rather oddly placed hernia-type bulge just below the left kidney area. The surgeon and gastro were quite surprised to see it, and they are 99% sure it's a herniation from weakening muscles. The only thing is that they can't take a look until they go in for the surgery. If I don't agree to it, then we may never know what it is. It has only surfaced in the last two weeks. Once again, thanks to everyone. I feel a bit better about my thoughts and concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 -Please know that just because a Dr is the head of gastro and the clinical director etc doesnt make them a expert on achalasia! Trust me I learned the hard way.I thought all that was great too, but the DR who was chair and head of his department screwed my son up leading him to another operation and in ICU for 8 days and about a 3 month recovery from another DR.Im not saying this to scare you but this is a fact.I realize you mentioned this yourself but I am just saying it again and giving a example of what happened to us.It doesnt make them any better or experienced or more qualified than the next cause of the title of what they do or run at the hospital.I learned that the hard way at the cost of my son having to suffer through another ruff surgery. In children achalasia is even more rare so it must be treated by a specialist.Yes because its rare THEY CAN HAVE HIGH NUMBERS OF SURGERIES.My sons DR has done over 300 + and that was almost 2 years ago so the number has risen.Most of these have been adults but still yet-my point is the numbers are high.There are a few great specilaist out there who also have these kinda numbers so it is possibleand they are out there. Please do not let just anyone operate on your son.They must be a specialist.Im not sure which one of the specilaist is closer to Pittsburg but Im sure someone here will tell you. I wish you all the best of luck in treatment.I am truly sorry your son is having to go through this.I know how hard it is on him as I had to see my own son go through it.It breaks my heart when I hear of another child having to go through this.Please do let me know if I can help at all. Do lots of research before you do anything with any DR that you choose!!!!Ask lots of questions, and get lots of names of patients to talk to,ask how many operations,which have failed , which have been a success etc... You dont want just anyone to operate on him. Tonia > > Wow, thank you for the warm welcome and information. I appreciate them. > > To answer some of the questions: > > My son is seen by physicians at the UPMC Children's Hospital in > Pittsburgh. I feel fairly confident in the docs since the gastro is > the department head, and the surgeon is the clinical director for ped > surgery. In addition, one of his docs is the director for clinical > excellence and service, but this doesn't mean they know everything, > and we know they don't. > > mentioned secondary achalasia. This is very interesting to me > since as I wrote, I have my own suspicions. I'm going to ask about this! > > asked about the name of my son's seizures. Depending upon the > doc referencing them, you can either see them as ESES (Electrical > Status Epilepticus during Slow wave sleep) or CSWS (Continuous > Spike-Wave Discharges during Sleep). He was diagnosed three years ago > February. > > Unfortunately, this hospital has never treated this disorder, so I > have been fighting to be referred out. Finally, the one doc was ready > to talk to those outside of here who have successfully treated > ESES/CSWS, but now that's on hold since the treatment is very high > doses of prednisone. If I do decide to go ahead with the surgery, > then he can't be on this protocol. However, I do wonder if the > prednisone might help the achalasia. Hmmm... > > Sandy, thanks for the tip. The head of his bed is actually raised > anyway because of his VP shunt. Thankfully, he does not cough in the > night, so this is a good sign! My son has always been thin, so he > started out with not having much to spare. It's interesting how the > different textured foods affect this. He hasn't complained about > eating anything. The only thing he says is, after a few bites, that > he can't eat anymore because he's " full. " > > What I was told about his condition is that there are few contractions > of the esophagus, and when it does contract, they are weak. He was > diagnosed from an upper GI and endoscopy. He has not had the > manometry since they are not sure it's an option for him. > > Sandi - Believe it or not, one of his docs actually emailed me that he > is suspicious of my son developing mitochondrial disease! I would > love to hear more about your grandson's condition and how achalasia is > a secondary condition. (Feel free to email me privately.) I have > been begging for these people to test him for autoimmune disorders, > and I do want this testing done as well. Wow. > > Notan - Thank you for the information. I do plan to ask about the > number of Heller's done, but I can't imagine that number is very high > considering the rarity of this. The only thing that comforts me is > that the surgeon knew exactly what needed done (as did the gastro), > and that he is the co-director for UPMC's adult hospital. > > Unfortunately, my son never complains about being hungry. I think his > stomach has become so small that a tiny bit of food satisfies it. I > agree with you that I don't understand why the g or j tubes would be a > big deal to them, but it seems they are. > > You asked about the muscle comment I made. It seems that the muscles > are weakening because now he has developed a rather oddly placed > hernia-type bulge just below the left kidney area. The surgeon and > gastro were quite surprised to see it, and they are 99% sure it's a > herniation from weakening muscles. The only thing is that they can't > take a look until they go in for the surgery. If I don't agree to it, > then we may never know what it is. It has only surfaced in the last > two weeks. > > Once again, thanks to everyone. I feel a bit better about my thoughts > and concerns. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Dear , http://health.usnews.com/sections/health/best-hospitals This is an article about the best hospitals in US News & World Reports. Although your situation is unique, it is fascinating to look at to see just how much spread there is between the top and bottom. Also it is historical and one doctor coming or going could make a huge difference, but it is a lesson to all of us that there are wide spans of differences in skills. Also http://www.ncbi.nlm.nih.gov/PubMed/ Pub Med is one of my favorite site to find medical article summaries, put in your doctors and the hospitals and the different issues your son has and you will learn a lot, which you probably already have. Also, the "full" comment is interesting. When we aren't treated, not sure we ever feel full, but he may mean his esophagus feels full. After a while the desire for food and appetite is completely gone, basically starvation, and dehydration I guess. Sandi in No Cal can be a great source to you and she is tons of fun. Some find that carbonation pushes open the sphincter and lets the food in. I saw it on a barium test when the dr. asked me why I don't use it. It is a little painful, but I saw the barium go right into my stomach. Some take sips with their food as they eat. Some find it too painful. The interesting part was that I thought I could "feel" that part of my esophagus, but I couldn't when I saw it on the barium screen. Does he have white foam that he has to spit out? That is saliva mixing with air and builds up despite not being able to drink much. That can be a huge problem. Not everyone gets that. Does he get spasms? Good luck in your search. You are learning a lot. Sandy>> Wow, thank you for the warm welcome and information. I appreciate them.> > To answer some of the questions:> > My son is seen by physicians at the UPMC Children's Hospital in> Pittsburgh. I feel fairly confident in the docs since the gastro is> the department head, and the surgeon is the clinical director for ped> surgery. In addition, one of his docs is the director for clinical> excellence and service, but this doesn't mean they know everything,> and we know they don't. > > mentioned secondary achalasia. This is very interesting to me> since as I wrote, I have my own suspicions. I'm going to ask about this!> > asked about the name of my son's seizures. Depending upon the> doc referencing them, you can either see them as ESES (Electrical> Status Epilepticus during Slow wave sleep) or CSWS (Continuous> Spike-Wave Discharges during Sleep). He was diagnosed three years ago> February. > > Unfortunately, this hospital has never treated this disorder, so I> have been fighting to be referred out. Finally, the one doc was ready> to talk to those outside of here who have successfully treated> ESES/CSWS, but now that's on hold since the treatment is very high> doses of prednisone. If I do decide to go ahead with the surgery,> then he can't be on this protocol. However, I do wonder if the> prednisone might help the achalasia. Hmmm...> > Sandy, thanks for the tip. The head of his bed is actually raised> anyway because of his VP shunt. Thankfully, he does not cough in the> night, so this is a good sign! My son has always been thin, so he> started out with not having much to spare. It's interesting how the> different textured foods affect this. He hasn't complained about> eating anything. The only thing he says is, after a few bites, that> he can't eat anymore because he's "full."> > What I was told about his condition is that there are few contractions> of the esophagus, and when it does contract, they are weak. He was> diagnosed from an upper GI and endoscopy. He has not had the> manometry since they are not sure it's an option for him.> > Sandi - Believe it or not, one of his docs actually emailed me that he> is suspicious of my son developing mitochondrial disease! I would> love to hear more about your grandson's condition and how achalasia is> a secondary condition. (Feel free to email me privately.) I have> been begging for these people to test him for autoimmune disorders,> and I do want this testing done as well. Wow.> > Notan - Thank you for the information. I do plan to ask about the> number of Heller's done, but I can't imagine that number is very high> considering the rarity of this. The only thing that comforts me is> that the surgeon knew exactly what needed done (as did the gastro),> and that he is the co-director for UPMC's adult hospital.> > Unfortunately, my son never complains about being hungry. I think his> stomach has become so small that a tiny bit of food satisfies it. I> agree with you that I don't understand why the g or j tubes would be a> big deal to them, but it seems they are. > > You asked about the muscle comment I made. It seems that the muscles> are weakening because now he has developed a rather oddly placed> hernia-type bulge just below the left kidney area. The surgeon and> gastro were quite surprised to see it, and they are 99% sure it's a> herniation from weakening muscles. The only thing is that they can't> take a look until they go in for the surgery. If I don't agree to it,> then we may never know what it is. It has only surfaced in the last> two weeks.> > Once again, thanks to everyone. I feel a bit better about my thoughts> and concerns.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 wrote: My son is seen by physicians at the UPMC Children's Hospital in Pittsburgh. I feel fairly confident in the docs since the gastro is the department head, and the surgeon is the clinical director for ped surgery. A good children's hospital is definitely a plus. They may have done more than expected if they draw patients from far away. The top centers even draw patients from around the world. Sandi - Believe it or not, one of his docs actually emailed me that he is suspicious of my son developing mitochondrial disease! Achalasia as the Harbinger of a Novel Mitochondrial Disorder in Childhood www.jpgn.org/pt/re/jpgn/fulltext.00005176-200504000-00021.htm "Novel" says a lot here. This is probably not what anyone here has. But it fits the topic. ....he has developed a rather oddly placed hernia-type bulge just below the left kidney area. ... If the muscle problem in that part of the body is related to the muscle problem in the esophagus his achalasia is probably secondary to some more general muscle problem. there are few contractions of the esophagus, and when it does contract, they are weak. He was diagnosed from an upper GI and endoscopy. He has not had the manometry since they are not sure it's an option for him. Are we discussing the same thing here? Manometry, also known as a motility test, is a test not a surgery, not myotomy. It is considered the gold standard for diagnosing achalasia. In a manometry test they place a probe, similar to an endoscope but usually smaller, down the esophagus and through the LES just inside the stomach. The probe measures the pressures produced by the muscles of the esophagus. With his other muscle problems I would think that they would want this information. Primary achalasia has a very typical pattern. Secondary achalasia would be expected to produce a different pattern as do other motility disorders. Why would this test not be an option for him? notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Tonia - You're right that a title doesn't necessarily make them more qualified. My only hope is that, as the head of the department/area, they may be more likely to keep up with new technology/treatments. I appreciate the insight and totally agree. - Thanks. I'll send Dr. Luketich an email. It is encouraging that he's here since, in my experience, the docs here aren't keen about talking with someone " outside " of the hospital. Sandi - The more you write, the more things in common my son has with your grandson! Yes, he has hydro, along with agensis of the corpus callosum, and a few other neuro problems. This is exactly why I can't help but have this nagging feeling that something is causing the achalasia. In his case, they think that his central apnea is caused by the seizures and not the other way around, but who really can tell? I will take you up on the offer for private emails. I think we have a lot to talk about! Notan - The idea of the achalasia being a secondary condition is exactly the point I've been trying to make to the docs. In the end, it may still require a surgery, but at this point, I think we need to get to the bottom of things before anything else. We are talking about the same procedure when we mention the manometry. The gastro first thought that the surgeon would want one, but the upper GI and endoscopy were enough " evidence " for him. The reason they do not want to try the manometry is that he does not fair well with such things. He becomes extremely upset if he's not sedated, thus leading to potential seizures. (I had to gown up and go to the room with him when he had the endoscopy because he became so upset.) The gastro said that he would have to remain awake for the procedure because they would need him to swallow. It may be something worth considering after he's had the TPN. They plan to " reassess " him after several weeks, but nobody has said what this entails. I've learned a lot just in the day that I've been on this list. I'm grateful! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Hi , Does your son also have hydrocephalus? was born with hydrocephalus and without a corpus collasum. He has had many surgeries for this and now doctors think that his hydrocephalus was actually caused from his mitochondrial disease. I would advise you to try and get testing for this done right away. If he should go into an energy crisis, this is extremely serious and life threatening situation. It would be important to have a diagnosis in order to know how to best treat him and possibly with proper supplemental treatment his symptoms could turn around without surgical intervention. I encourage you to email the doctor back who is suspicious of mito disease. Testing takes time and it is important to find out. Ask to be referred to a geneticist. is also going to be tested for sleep apnea very soon as they are suspecting this could be a reason for his seizures. Also, how was the diagnosis of achalasia made? Did he have a manometry? Is it for sure achalasia? What type of achalasia? The type of achalasia most common with mitochondrial disease is cricopharyngeal achalasia which affects the upper esophagus. If it is truly achalasia and he needs a myotomy, it is important to have a surgeon who is highly experienced, and also, if he should have mitochondrial disease, it is also important to find out first before having surgery because surgery or an infection could be extremely compromising to his health. I hope you find the links I sent to you helpful. The Mitochondrial Disease Foundation is located in Pittsburgh and I am sure they would be a great resource for you in finding the right doctors in your area. You may email me privately if you wish. Sandi From: achalasia [mailto:achalasia ] On Behalf Of Sent: Sunday, March 16, 2008 8:27 AM achalasia Subject: Re: New Member... Wow, thank you for the warm welcome and information. I appreciate them. To answer some of the questions: My son is seen by physicians at the UPMC Children's Hospital in Pittsburgh. I feel fairly confident in the docs since the gastro is the department head, and the surgeon is the clinical director for ped surgery. In addition, one of his docs is the director for clinical excellence and service, but this doesn't mean they know everything, and we know they don't. mentioned secondary achalasia. This is very interesting to me since as I wrote, I have my own suspicions. I'm going to ask about this! asked about the name of my son's seizures. Depending upon the doc referencing them, you can either see them as ESES (Electrical Status Epilepticus during Slow wave sleep) or CSWS (Continuous Spike-Wave Discharges during Sleep). He was diagnosed three years ago February. Unfortunately, this hospital has never treated this disorder, so I have been fighting to be referred out. Finally, the one doc was ready to talk to those outside of here who have successfully treated ESES/CSWS, but now that's on hold since the treatment is very high doses of prednisone. If I do decide to go ahead with the surgery, then he can't be on this protocol. However, I do wonder if the prednisone might help the achalasia. Hmmm... Sandy, thanks for the tip. The head of his bed is actually raised anyway because of his VP shunt. Thankfully, he does not cough in the night, so this is a good sign! My son has always been thin, so he started out with not having much to spare. It's interesting how the different textured foods affect this. He hasn't complained about eating anything. The only thing he says is, after a few bites, that he can't eat anymore because he's " full. " What I was told about his condition is that there are few contractions of the esophagus, and when it does contract, they are weak. He was diagnosed from an upper GI and endoscopy. He has not had the manometry since they are not sure it's an option for him. Sandi - Believe it or not, one of his docs actually emailed me that he is suspicious of my son developing mitochondrial disease! I would love to hear more about your grandson's condition and how achalasia is a secondary condition. (Feel free to email me privately.) I have been begging for these people to test him for autoimmune disorders, and I do want this testing done as well. Wow. Notan - Thank you for the information. I do plan to ask about the number of Heller's done, but I can't imagine that number is very high considering the rarity of this. The only thing that comforts me is that the surgeon knew exactly what needed done (as did the gastro), and that he is the co-director for UPMC's adult hospital. Unfortunately, my son never complains about being hungry. I think his stomach has become so small that a tiny bit of food satisfies it. I agree with you that I don't understand why the g or j tubes would be a big deal to them, but it seems they are. You asked about the muscle comment I made. It seems that the muscles are weakening because now he has developed a rather oddly placed hernia-type bulge just below the left kidney area. The surgeon and gastro were quite surprised to see it, and they are 99% sure it's a herniation from weakening muscles. The only thing is that they can't take a look until they go in for the surgery. If I don't agree to it, then we may never know what it is. It has only surfaced in the last two weeks. Once again, thanks to everyone. I feel a bit better about my thoughts and concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Dear , Here is a doctor that is highly recommended for mitochondrial disease. This doctor comes recommended by the mitochondrial group my daughter is a member of. If you go here, you get the tests back really quickly, plus it is at the Cleveland Clinic where they specialize in achalasia! His name is Dr. Bruce Cohen. Here is a link to his contact info. http://cms.clevelandclinic.org/neuroscience/body.cfm?id=864 Also, ’s doctor is Dr. Boles at Children’s hospital in LA and he is really good at responding to email. http://www.ucmg.org/physician/rboles_frame.html Wishing you all the best! Sent you a really lengthy email off list…. Sandi From: achalasia [mailto:achalasia ] On Behalf Of Sent: Sunday, March 16, 2008 11:52 AM achalasia Subject: Re: New Member... Tonia - You're right that a title doesn't necessarily make them more qualified. My only hope is that, as the head of the department/area, they may be more likely to keep up with new technology/treatments. I appreciate the insight and totally agree. - Thanks. I'll send Dr. Luketich an email. It is encouraging that he's here since, in my experience, the docs here aren't keen about talking with someone " outside " of the hospital. Sandi - The more you write, the more things in common my son has with your grandson! Yes, he has hydro, along with agensis of the corpus callosum, and a few other neuro problems. This is exactly why I can't help but have this nagging feeling that something is causing the achalasia. In his case, they think that his central apnea is caused by the seizures and not the other way around, but who really can tell? I will take you up on the offer for private emails. I think we have a lot to talk about! Notan - The idea of the achalasia being a secondary condition is exactly the point I've been trying to make to the docs. In the end, it may still require a surgery, but at this point, I think we need to get to the bottom of things before anything else. We are talking about the same procedure when we mention the manometry. The gastro first thought that the surgeon would want one, but the upper GI and endoscopy were enough " evidence " for him. The reason they do not want to try the manometry is that he does not fair well with such things. He becomes extremely upset if he's not sedated, thus leading to potential seizures. (I had to gown up and go to the room with him when he had the endoscopy because he became so upset.) The gastro said that he would have to remain awake for the procedure because they would need him to swallow. It may be something worth considering after he's had the TPN. They plan to " reassess " him after several weeks, but nobody has said what this entails. I've learned a lot just in the day that I've been on this list. I'm grateful! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 wrote: > ... The reason they do not want to try the manometry is that he does not fair well > with such things. He becomes extremely upset if he's not sedated, thus > leading to potential seizures. This issue has come up before. Many doctors will tell you that a patient can not be sedated for a manometry. That is not entirely true. It is done, especially for children. In some cases the patient is put completely out while the probe is placed. The problem is that there is no standard by which to interpret the results when the test was done under sedation. Just because there are no standards does not mean that a doctor will not find them informative. Some doctors that do a lot of manometries have experience reading ones done under sedation. If your doctors don't feel comfortable reading the results they could send them for review by someone that has the experience. Sorry this reply is kind of late. I was sidetracked by the nuisance topics. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2009 Report Share Posted October 19, 2009 Hello, I'm a 39 year-old male just joining the group. I'll introduce myself more fully in my next post. I just wanted to test the waters with this brief message to see if it will make it through... Thanks, Quote Link to comment Share on other sites More sharing options...
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